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Skepticism is fine. I even expressed my own skepticism about my treatment. But I think some members find it amusing to down right insult people. And this is the 2nd time this is happening in the same thread! Worst - I think it seems to be an accepted behavior by members and moderators alike?

Well I'd like to break the news to people here - HIV is a world disease! It effects people in places you have no clue about! I thought this forum was open to people from all over the world. Different cultures look at it differently. If you're going to be a close minded prick about it - at least have the decency to show some respect ,consideration or even healthy curiosity to people who might not share your unwarranted medical opinions. I welcome support, consideration and advise but not cheap mockery. I have a sense of humor too but not at the expense of someone who is sharing the same deadly disease as mine.

And do consider that your posts might be funny to you. But you don't know the mental state of the person who is sitting on the other side or how he/she is handling being positive.

Skepticism is fine. I even expressed my own skepticism about my treatment. But I think some members find it amusing to down right insult people. And this is the 2nd time this is happening in the same thread! Worst - I think it seems to be an accepted behavior by members and moderators alike?

Well I'd like to break the news to people here - HIV is a world disease! It effects people in places you have no clue about! I thought this forum was open to people from all over the world. Different cultures look at it differently. If you're going to be a close minded prick about it - at least have the decency to show some respect ,consideration or even healthy curiosity to people who might not share your unwarranted medical opinions. I welcome support, consideration and advise but not cheap mockery. I have a sense of humor too but not at the expense of someone who is sharing the same deadly disease as mine.

And do consider that your posts might be funny to you. But you don't know the mental state of the person who is sitting on the other side or how he/she is handling being positive.

Whoa, chill darlin. No one is makking a mockery of you or your situation.

Wolfie

Logged

Complacency is the enemy. Challenge yourself daily for maximum return on investment.

Skepticism is fine. I even expressed my own skepticism about my treatment. But I think some members find it amusing to down right insult people. And this is the 2nd time this is happening in the same thread! Worst - I think it seems to be an accepted behavior by members and moderators alike?

Well I'd like to break the news to people here - HIV is a world disease! It effects people in places you have no clue about! I thought this forum was open to people from all over the world. Different cultures look at it differently. If you're going to be a close minded prick about it - at least have the decency to show some respect ,consideration or even healthy curiosity to people who might not share your unwarranted medical opinions. I welcome support, consideration and advise but not cheap mockery. This is not high-school.

And do consider that your posts might be funny to you. But you don't know the mental state of the person who is sitting on the other side or how he/she is handling being positive.

OK , its more than skepticism , its down right hostility toward people who even suggest that there is anything that's going to do squat to keep you alive if you have HIV and need to be on meds . Its not being closed minded to only rely on proven science when dealing with a deadly disease . There are other members here who have been poz longer than my 27 years with the disease so we do know a little about aids around the globe because we have had a few years to think about .

People are not trying to be intentionally rude but the truth is the stakes are high when it comes to pushing supplements instead of therapy's with scientific evidence to show it works . I wouldn't want some body newly infected eating weeds or supplements thinking it may save their life because it just wont .

Skepticism is fine. I even expressed my own skepticism about my treatment. But I think some members find it amusing to down right insult people. And this is the 2nd time this is happening in the same thread! Worst - I think it seems to be an accepted behavior by members and moderators alike?

Well I'd like to break the news to people here - HIV is a world disease! It effects people in places you have no clue about! I thought this forum was open to people from all over the world. Different cultures look at it differently. If you're going to be a close minded prick about it - at least have the decency to show some respect ,consideration or even healthy curiosity to people who might not share your unwarranted medical opinions. I welcome support, consideration and advise but not cheap mockery. I have a sense of humor too but not at the expense of someone who is sharing the same deadly disease as mine.

And do consider that your posts might be funny to you. But you don't know the mental state of the person who is sitting on the other side or how he/she is handling being positive.

Contagion,

We have seen it all before. Some people believe that certain juices, mushrooms, anaerobic chambers, trampolin jumping, strange treatments by weird doctors in other parts of the world, etc. can help them against this virus. The prerogative to follow these treatments is always yours. Their promotion as alternatives to what science has shown for many many years as the only way to successfully combat this virus is not something that many members of this forum appreciate at all. That's all.

Logged

"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

It is being close minded @jg1962. HIV is still a relatively new disease and there are new compounds being found every now and then which happen to have anti-viral effects. But you have a problem if some of these compounds might be found in something silly like green tea? I don't doubt the enormous benefits of ARVs, but to suggest everyone with HIV should be on them based on research which is American or which is conveniently accessible to you is right?

People with low CD4 should get on ARVs - no doubt. But not everyone has access to them or can afford them and that is the reason why developing countries are researching into alternative therapies. Why show your hostility to that?

It is being close minded @jg1962. HIV is still a relatively new disease and there are new compounds being found every now and then which happen to have anti-viral effects. But you have a problem if some of these compounds might be found in something silly like green tea? I don't doubt the enormous benefits of ARVs, but to suggest everyone with HIV should be on them based on research which is American or which is conveniently accessible to you is right?

People with low CD4 should get on ARVs - no doubt. But not everyone has access to them or can afford them and that is the reason why developing countries are researching into alternative therapies. Why show your hostility to that?

It's unfortunate that people don't have access to life saving drugs, but it doesn't chnage the reality.

Wolfie

Logged

Complacency is the enemy. Challenge yourself daily for maximum return on investment.

It is being close minded @jg1962. HIV is still a relatively new disease and there are new compounds being found every now and then which happen to have anti-viral effects. But you have a problem if some of these compounds might be found in something silly like green tea? I don't doubt the enormous benefits of ARVs, but to suggest everyone with HIV should be on them based on research which is American or which is conveniently accessible to you is right?

People with low CD4 should get on ARVs - no doubt. But not everyone has access to them or can afford them and that is the reason why developing countries are researching into alternative therapies. Why show your hostility to that?

Its a hard knock life when you are POZ but as of right now ARV's are the only thing that will keep you alive if you need them . Its a sad fact that they are not available to every person that needs them because they will eventually die without them if they are not elite controllers or possibly long term non progressors .

I'm sorry but this is the unfortunate truth and a truth that the newly infected need to come to terms with .

Once you read it, you will find a rebuttal of sorts linked from that thread, but you can access it directly here

Maybe if you read about this person's experiences, you will see that no one here is mocking you; people are just trying to make you aware that there are consequences, as it is all too common to see people originate threads here about how afraid they are of treatment in addition to asking all sorts of questions based upon misconceptions they have from third hand news. In other words, some people feel that just because something happens to someone else who is taking meds, that means that it will also happen to them when they start.

Everyone respects that you feel that you must do whatever it is you feel is appropriate for you in the long run.

And incidentally, living in NYC how is it that you don't have access to meds, if you ever did decide to start treatment? You mentioned something about insurance kicking in soon, if I'm not mistaken...? Aren't you aware of the various drug assistance programs and/or ADAP which are available (if you qualify)?

Seroconverted: Early 80sTested & confirmed what I already knew: early 90s

Current regimen: Atripla. Last regimen: Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky )Past regimensFun stuff (in the past): HAV/HBV, crypto, shingles, AIDS, PCP

You can read some clinical trial data on it here http://herbtab.in/ And as for if I'm on to something, I don't know. I've been doing good for 4 years, probably on the meds for 3. Fingers crossed!

Hey Contagion, few things I wanted to point out about the clinical data you strung up:

-It is from 2003. At the time, India was estimated to have the largest number of infected people for any country. The estimated numbers were significantly slashed in 2007-08 (can't remember exactly). My point is a lot of these herb cures (by private practitioners) were commonplace at a time (and still are to a large extent) when there was general panic in the air- and these alternative medicine guys always encash on that. I couldn't see any recent clinical trials on that link. Moreover, these are trials produced by some obscure private company that states this on their Home Page: "Thus we plan to create a record that these patients though living with HIV/AIDS can live normally and need not be a burden on society. Further they need not be pushed towards death as a result of side effects of the highly toxic Anti Retroviral medicines." Do you really trust somone who says that??!!!

-Although Ayurveda is quite popular in India, it is mostly used by people who cannot afford Western medicine or are so steeped in belief systems/ superstitions (usually the very poor who tend to be grossly illinformed and/or very illiterate), that it colours their perception of tangible scientific fact.

-Ayurveda is alternative medicine even within India and is NOT endorsed or supported by NACO (National AIDS Control Organisation of India)- the nodal agency for HIV/AIDS- which recommends only ARVs.

-I hope you do switch to ARVs when the time comes (which I believe you will, as you say). However, I'm still sceptical about the contents of these tablets, whether all they contain are herbs like they claim.

Yesterday, I wrote a post, thought I hit Post but I hit Poof! I looked at that study, but also looked further at what Dr. Pazare (whose name is on the HerbTab study) has done in the years since. It is heartening to note he's attending an HIV Conference next month with some notable US HIV docs and is definitely involved with ARV prescription over the last 8 years.

If I were near him, I'd call to inquire if he still advises use of HerbTab. What caught my eye about that study's results was the notation that 8 of 9 patients were cured of their tuberculosis. That just doesn't seem to jibe with TB regimens which have relied on INH for nearly half a century. Although they're working on new, shorter-administation regimens, herbs are not among them.

Regarding use of alternative methods or letting the immune system fight madly unaided--if I had it to do over, based on what I've read and heard, I wouldn't wait as long to begin meds.

contagion, you've said that you've been poz for four years and on this alt. treatment for the last three of those years.

If you were diagnosed not long after you were infected (within, say, a year or less), then a drop in VL during this same time line would have happened anyway, unless you are an unusually fast progressor. The VL is normally quite high early on in infection and it normally steadily drops down to numbers like yours within the first six to eighteen months (sometimes more - average seems to be around twelve).

What I'm saying is that it is more than possible that your VL drop has nothing or very little to do with the herbs you're taking. It's just par for the course in the first years of hiv infection.

We're not seeing this happen quite as often these days as we used to, but that is ONLY because more and more people are starting ARVs from the point of diagnosis or very soon after, even when it's obvious it's a new infection. We're not getting the chance to see the natural early progression (high VL in the first year or so, then steadily/slowly dropping and levelling out for the next five to ten-ish years) as often as we used to.

Again, what I'm saying is that it is more than possible that your VL drop has nothing or very little to do with the herbs you're taking.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

@Solo That is correct. I'm waiting for my insurance to kick in, but they do have a preexisting thingy but I will figure out something. I'm not sure about ADAP, last I checked I don't think I meet their income requirements. And no, if anything, I forget what people say on forums - I in fact admire your patience to type out that post.

@Em, @space - Dr. Pazare still prescribes this for most newly diagnosed patients unless they have low CD4. I wouldn't be taking this shit if not for him. He is also one of the better HIV docs in that country and has treated patients from the beginning of the epidemic. Certainly not some qwack prescribing trampolines.

Sweetheart, he lives in India. He was born there. I'd say he knows what he's talking about.

And he is educated. I believe from one of the upper castes as it is.

Logged

"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Neither Space nor I cite Dr. Pazare a quack. I pulled the upcoming conference link to note that he does, in fact, prescribe ARVs and isn't treating with Ayurvedic meds along. With the second link to the study in 2010, now I'm more curious as to why a study would only look at CD4 counts and not VL while attempting to establish efficacy of the Ayurvedic med.

My first ID doc said to me -- " Always tell us what you're doing or taking (re: alternative medicine) because no one's figured this out yet and we remain open-minded." And, he wasn't just blowing honesty sunshine my way -- he was serious. So, that's one US-based doc's perspective, and I'm sure there are others like his.

Donít patronize. Iíve lived in India nearly all my life and I know perfectly well how things function in this country.

Iíll concede I donít hold a degree in Ayurvedic medicine though. I never said that this Dr. Pazare is a quack. I was merely questioning the veracity of some claims made on his site, as well as of the clinical trials results and in that light, I provided you with pertinent cultural/historical context as food for thought.

And hereís more:

Advocates and practitioners of Ayurveda may be claiming that the centuries-old system has a solution for the dreaded AIDS, but the National Aids Control Organisation (Naco) is not prepared to buy any of it. It has asked all medical colleges to stop experimenting with Ayurvedic treatment on HIV patients.The organsation feels that the alternate treatment is destroying the importance of antiretroviral therapy (ART) and other therapeutic drugs for HIV. Acting on its order, the Mumbai District Aids Control Society (MDACS) has already stalled all such ongoing studies by students and doctors at various medical colleges in the cityÖÖÖÖÖAnother study by consultant physician and professor of medicine, Dr AR Pazare, from KEM was discontinued after Naco's order. The study which had completed one year, used an Ayurvedic drug as an immune booster for HIV patients. It had yielded positive results in increasing the CD4 count in the patients. The CD4 cells indicate the health of a person. The researchers are now seeking permission from the Centre to re-start the study.

How interesting that you missed the aforementioned article which I obatined in a second off a simple Google search.

From everything youíve stated as well as the information on the herbal web-link, the overriding concern seems to be to delay commencement of ARVs for as long as possible because they will inevitably destroy your organs and ultimately kill you, or similar prattle. Itís precisely that sort of dangerous mindset that the older members on this forum have witnessed ad-nauseum and know where that path leads to- hence, the concern. No one said modern ARVs are totally benign and have no side effects, however, it is common knowledge that modern ARVs are much-improved and are very tolerable (for the liver and kidneys also) compare to before, and they continue to improve- bottom line: they are VERY effective and the only meds that are scientifically proven to work. Most of the fears are therefore, unwarranted.

That said, if you want to experiment with alternative medicine as long as your CD4s are in the Ďnormalí range then go right ahead but be please be aware of the pitfalls. And the possibility that the tablets, on the assumption theyíre innocuous (best case scenario)- are still likely a waste of your money.

Best, whatever you decide.

PS-If you think by not promoting Ayurveda as an all-encompassing panacea India's lost its ticket to being catapulted to scientific fame or something of the sort, then you neednít worry. Iím sure there are plenty more meaningful spheres we will have to boast about in the years ahead. Personally, I hope Dr. Pradeep Seth (virologist at the All India Institute of Medical Sciences) makes a breakthrough- his laboratory has been working on the development of Indian HIV-1 subtype C DNA vaccine.

PPS- Also, if you know India as well as you assert, then you must also know that English, though not the native language, is the official language for business, medicine, the law etc and that millions speak it with near-native fluency -such as myself and I'm fairly certain the renowned Dr. Pazare and his staff who set up the web-page.

With the second link to the study in 2010, now I'm more curious as to why a study would only look at CD4 counts and not VL while attempting to establish efficacy of the Ayurvedic med.

The link is a dumbed down press article and not a research paper. He does in-fact check VL every 6 months. One reason though I can see why VL may not be checked for all patients is because of it's higher cost than CD4. Most HIV patients in India come from a poor setting. In fact scientists are trying to see if haemoglobin measurement could be used as an indicator for the progression of HIV/AIDS as it much cheaper than a CD4 test.

My first ID doc said to me -- " Always tell us what you're doing or taking (re: alternative medicine) because no one's figured this out yet and we remain open-minded." And, he wasn't just blowing honesty sunshine my way -- he was serious. So, that's one US-based doc's perspective, and I'm sure there are others like his.

@spacebarsux I'm not contesting the benefits of ARVs. I'm not even suggesting my alternative therapy as an alternative to ARV - rather it's might have given me a few years before I go on ARVs, while still maintaining my counts. Is that proven? I don't know. But why be so aggressively closed to that thought?

Do you think I don't know that NACO had initially shutdown the trials? It is because of the widespread promotion of Ayurveda as a "cure" during that time that they introduced a blanket ban. But Pazare was able to successively overturn the ban for his study. Please don't come here and make sensational posts just because you were born in India or know how to Google search. That is stupid. I wouldn't open my mouth if I hadn't met the people doing this work personally or visited their hospitals and labs for the past 3 years.

And fyi - that is not Pazare's website, it is the website of the company based in Gujarat that makes the pills. Another naive assumption!

This is clearly not a matter of being close minded . Do you honestly think that us that have lost so many dear friends and family would turn a blind eye to anything that could remotely keep somebody we care about alive or a mother and father from grieving themselves to death over the loss of a child . Its not logical , its you that is squandering an opportunity to learn something here and no one else .

@spacebarsux I'm not contesting the benefits of ARVs. I'm not even suggesting my alternative therapy as an alternative to ARV - rather it's might have given me a few years before I go on ARVs, while still maintaining my counts. Is that proven? I don't know. But why be so aggressively closed to that thought?

Do you think I don't know that NACO had initially shutdown the trials? It is because of the widespread promotion of Ayurveda as a "cure" during that time that they introduced a blanket ban. But Pazare was able to successively overturn the ban for his study. Please don't come here and make sensational posts just because you were born in India or know how to Google search. That is stupid. I wouldn't open my mouth if I hadn't met the people doing this work personally or visited their hospitals and labs for the past 3 years.

And fyi - that is not Pazare's website, it is the website of the company based in Gujarat that makes the pills. Another naive assumption!

How tedious. Can we please get back to the original topic of this thread? As in people trying to use AIDSmeds for hookup purposes

SoloLTS, your thread has been hijacked!

Logged

"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Ever since I joined the forum my sex-drive died...I even stopped masturbating. A side-effect perhaps?

That's too bad, gurl. Pity.

Logged

"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

I'm not sure if we could open your mind with a crow bar. If you want to discuss something, it requires you to show some respect for the members here. Degrading members or calling folks stupid only reflects poorly on you. If you want to talk with the adults, you need to start acting like one.

@killfoile I've given up. It is really simple to understand where I'm coming from. But I've been shot down repeatedly, my choices mocked and judged. I've realized that no one wants wants to even try to understand what I'm saying...I wonder if most are even reading the posts fully.

RESPECT? Please don't dare talk about respect when I've received none here. You need to give respect to expect it. I've really held my tongue on several instances and tried to be as respectful as possible. Where were you when I was asking for respect few posts back? It is surprising when you reflect on my choice of words when can I pick a dozen instances where the adults here have resorted to worse. Selective nitpicking at the finest. Stop judging and pretending to know everything, jeez.

@killfoile I've given up. It is really simple to understand where I'm coming from. But I've been shot down repeatedly, my choices mocked and judged. I've realized that no one wants wants to even try to understand what I'm saying...I wonder if most are even reading the posts fully.

RESPECT? Please don't dare talk about respect when I've received none here. You need to give respect to expect it. I've really held my tongue on several instances and tried to be as respectful as possible. Where were you when I was asking for respect few posts back? It is surprising when you reflect on my choice of words when can I pick a dozen instances where the adults here have resorted to worse. Selective nitpicking at the finest. Stop judging and pretending to know everything, jeez.

You seem to be confusing "judging" with my pointing out your bad behavior. I only suggested that if you wish to be taken seriously, then you need to act in a respectful manner. I wonder why you take offense to such a request and I'm just telling you that if you want to be heard, then do so with some respect.

I always suspect someone who is quick to judge others, or who tries to deflect his own responsibility by criticizing others. I find it tiresome when another poster blows in, claims to know something that they cannot prove and then wonders when some members are cautious. Nobody mocked you for your posts, so stop the drama. I never claimed to know everything and that's the way a child argues. Last time I checked, no kids here.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Seroconverted: Early 80sTested & confirmed what I already knew: early 90s

Current regimen: Atripla. Last regimen: Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky )Past regimensFun stuff (in the past): HAV/HBV, crypto, shingles, AIDS, PCP